Person with ME

Diagnosed with ME 2004

I'm a 33 year old university lecturer who was diagnosed with ME in November 2004 following what was initially diagnosed viral pleurisy. I failed to recover properly developing symptoms which seemed like a return to glandular fever: sore throat, temperature, swollen lymph nodes and glands, headache, exhaustion, joint and muscle pain.
I spent the first year bedbound, the second year housebound and now, the third year mostly housebound.

After a year, I had a chest x-ray showing calcification on my chest, leading to a CT scan and AFB sputum tests for tuberculosis. The conclusion of doctors was that I'd had a lung infection at some point that had caused calcification, but they could not comment whether I'd in fact had the early stages of TB rather than viral pleurisy. At onset of the unnamed infection, I was treated with massive doses of antibiotics which were administered regardless of the fact that my GP took no sputum test and no chest x-ray. What became clear, was that if I'd had TB it was no longer active. Nevertheless, I still had to give more AFB sputum tests in case the 'possible TB' came back again.

Later, I was sent for yet more blood tests since I still had too many white cells in my blood results, suggesting an infection of some kind, but nothing could be found except too many anti-bodies for the Epstein-Barr virus or as the serology test read: 'possible latent Epstein-Barr infection resulting in chronic fatigue'.

In spite of these medical facts which are catalogued on paper - an abnormal chest x-ray and CT scan, abnormal blood results - doctors shift around this evidence with embarrassed coughs that must surely be psychosomatic.

All that is available for me in the way of 'treatment' is CBT and GET. Even though, I relapsed very badly on an aggressive GET programme. In spite of WHO classification of ME as physical condition - it's a neurological illness not a psychiatric condition - and despite the excellent Canadian Guidelines published last year, it is impossible to find a consultant within the NHS with a biomedical approach to this illness.

It seems psychiatrists and insurance companies hold a very firm grip of the Department of Health's approach to ME proving, perhaps, that ME treatment in Britain is dictated more by financial considerations rather than by medical or ethical ones. It is a shame that Britain must lag behind the rest of the international community, leaving young, talented people on incapacity benefit, when they could successfully be treated with anti-virals and immune modulators as in other countries. While psychiatrists protect their academic careers rather than their patients, there will be more victims of ME like Sophia Mirza.

Just how many psychiatrists want to do a squealy u-turn mid-career, hold up their hands, say 'we were wrong' and thereby relinquish research funding for psychiatry?


They'd rather stay in denial and hold onto their academic careers by their fingernails at the cost of their patient's health. Just how many insurance companies want to pay out to ME patients when they can suggest the illness can be treated with mind over matter approaches that seem to cost the NHS very little? This is, of course, false economy: if ME patients were medically treated it would in fact save the government in costly CBT programmes, incapacity benefit and DLA. If ME patients were treated properly as in other countries like Canada, the insurance companies wouldn't shirk paying up because there wouldn't be the same volume of applications for medical retirement. This piece of commonsense evades the psychiatrists with a stake in receiving research funding. Well, I suppose it would.

Before I had ME, I happily worked as a full-time lecturer for seven years, did classical ballet, contemporary dance and flamenco classes after work, travelled and lived an entirely full life. I have no history of mental illness, no current symptoms of depression and have never taken any medication for these conditions. Considering the appalling misunderstanding of this illness and terrible social pressures, I am amazed by and proud of the bravery of ME sufferers across the country. For my part, I find misunderstanding of this illness as difficult to cope with as the illness itself. Maybe it's time for psychiatrists to address their unhelpful beliefs about this illness and their repressed reasons for continuing to block biomedical research.